By Craig Dickson
In the past couple of weeks, I have caught waves, trained hard at the gym, been part of a podcast, worked my job, looked after my family, been out to a show, attended a live sporting event, read books and watched TV.
I have MOG antibody disease (MOGAD), so I’ve also used a ton of hand sanitizer as I have a compromised immune system, felt like I have never slept (whether I do or not, it feels almost the same), supported multiple people through issues with their illness, and experienced more visual and nerve symptoms each day than I can even list (currently I have weird black smudges flashing in my lower vision, pain in a finger, tingling lips, a slightly numb shin and a buzzing in my temples like someone has shaken up a bottle of fizzy drink – good times).
MOG-Ab is Myelin Oligodendrocyte Glycoprotein Antibody. It’s kind of like Multiple Sclerosis, but the damage happens via a different mechanism. Essentially, we all have this protein that is located on the surface of myelin sheaths in the central nervous system, and my clever body has decided to create an antibody to destroy this glycoprotein.
MOGAD can present similarly to other better-known brain and spinal autoimmune diseases and, until recently, has often presented neurologists with a subset of patients who don’t respond to regular treatments and/or have unusual brain scans (MOGAD patients often have irregularly shaped lesions).
In 2015, a blood test was developed to reliably screen for MOGAD. MOGAD is currently considered very rare, but with the blood test becoming more available and neurologists more aware, it is expected MOGAD numbers will increase.
There are no medications specifically for MOGAD. Everything we do is an educated guess, and studies are still in their infancy. It’s both scary and exciting being in the vanguard of a medical and treatment conundrum knowing that what is learnt about me will shape medicine in some small way. It makes the general disease crappiness slightly less so.
I want to acknowledge that like other demyelinating diseases, MOGAD impacts everyone in a different way. Some have partial or full paralysis, hearing loss, are blind, have limited bladder control, and a myriad of nervous system sensations. Not all of those things are my story at the moment, and I want to send a shout out to all those who have been hit worse than I have.
For me, this disease is trying to take my eyesight and my balance and is causing many other things that make life really hard on a daily basis. I don’t know what my life will look like in one year, five years, or ten years. How much vision will I lose? When will I have to stop working? When will I be unable to bodyboard? Will I always be able to walk? Every night when I close my eyes, I don’t know what the world will look like in the morning, my vision is that fluid.
At the end of the day, this disease sucks, but I am lucky. I still live an active and enjoyable life. I bodyboard, I train, I work part time, I have a five-year-old to keep up with. I haven’t experienced paralysis, and for now, the damage done to my brain and nerves can be worked around in many respects. My work for the past eleven years gave me substantial knowledge of the brain and nervous system, so I have been able to take my own steps to promote healing: single leg exercises for balance repair; strength training for muscle weakness and to counteract the medication side effects on bones, muscles and body weight; adding Vitamin D supplements (it is used for patients with multiple sclerosis) and making sure I have plenty of Omega 3 and 6 (supports brain development) from salmon, tuna, walnuts etc.
Unlike many with MOGAD, I was diagnosed early because I had a good general practitioner, a good neurologist with an extended neurology network, and access to free and high-quality health care (being in Australia). My ‘overarching’ medication, Rituximab, seems to be working, hopefully for the long term, and I still use high dose steroids daily. All things considered, I have experienced a significant improvement from where I started – almost unable to see entirely and being unable to lie down on a bodyboard in the water without falling off.
I guess I want people to know that you can keep living, you can keep pushing. You do have a choice in how you respond to this crap and the little things you do positively can make a big difference in your journey. Learn all you can about your illness, your medications, and discuss everything with your treating doctors. Go into appointments with a list of topics or questions and don’t leave until you understand. Get a psychologist on your team and also find your areas of focus (a sport, family, hobby, work, journaling).
My challenge is letting my body rest; the constant battle of not letting the disease control me, but also having to let it control me so my body can function.
It’s ok to struggle, it’s ok to have bad days with this, we all do. The difference is in how you approach your next day.
I was interviewed about my lifestyle, illness and love of the ocean on the podcast Chasing Clarity, Episode 26. People new to the disease have told me they found it useful for themselves and to help their family and friends understand what it all feels like.
I am more than happy for people to contact me about anything, and am happy to assist if I can.
If you’d like to contact Craig, please email us at firstname.lastname@example.org.
Instagram – @craigben84